The Ministry of Health is trying to provide medicines for patients with spinal muscular atrophy (SMA) and other rare diseases, IRIB news agency reported on Friday.
Some medicines, especially those needed for SMA patients and certain rare diseases that are only made by American pharmaceutical companies, are not imported to the country, Health Minister Saeed Namaki said.
“I wrote two letters to World Health Organization (WHO) Director-General Tedros Adhanom, over the past few days, and also to some NGOs hoping that we would be able to resolve the issue,” Namaki noted.
He added that medicine provision for all patients have been hindered, but it can be said that this year’s medicine shortage is one-third of last year’s.
Spinal muscular atrophy is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and sometimes fatal muscle weakness.
SMA affects approximately 1 in 11,000 births, affecting any race or gender.
Tehran times